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100 Years of Neglect: Chagas Disease in Bolivia
This year marks the 100th anniversary of the discovery of Chagas disease, or American trypanosomiasis, yet it remains one of the world's most neglected diseases.
July 24, 2009
This article is part of the Summer 2009 issue of the MSF Alert newsletter.
Bolivia 2009 © Mary Vonckx/MSF
Primarily affecting poor people throughout Central and South America, an estimated 14 million people have Chagas disease, and about 15,000 die from it every year. The disease is caused by the parasite Trypanosoma cruzi and is mainly transmitted through the bite of the the vinchuca, a beetle-like insect. Pregnant mothers can pass the parasite to their babies; it can also be transmitted through blood transfusions, organ transplants, and, much less often, through contaminated food or drink. Since 1999, Doctors Without Borders/Médecins Sans Frontières (MSF) has provided free diagnosis and treatment services for Chagas disease in countries including Honduras, Nicaragua, Guatemala, and Bolivia, which has the largest number of cases in the world. In Cochabamba, central Boliva, MSF operates a free Chagas treatment program that is unique in that it treats both children and adults.
Bolivia 2009 © Mary Vonckx/MSF
At least 10 percent of Bolivia’s population is believed to be infected with Chagas, the world’s highest rate of the disease. Chagas typically affects those living in mud or straw housing, where cracks in the walls and roofs harbor the vinchuca insect.
At some point, perhaps as her family was sleeping one night, 10-year-old Araceli Espinoza was bitten by a vinchuca and infected with Chagas disease. Espinoza shares a tiny room with three siblings and their grandmother in a mud-brick home in Los Pinos, a poor neighborhood on the outskirts of Cochabamba. “The house was filled with vinchucas,” said MSF physician Victor Condé. “They were in the bedsheets, under the mattress, and in the children’s clothing.
Though they had seen vinchucas in their home, the family knew little about Chagas disease before Espinoza became sick. “It happened one day when I was at school. It hurt here, in my chest. I couldn’t run, and I was very tired.” By the time Espinoza was diagnosed with Chagas and began treatment, the parasite had already caused serious damage to her heart. “She is doing much better, but we fear that the damage is irreversible. We are also concerned about the other members of her family,” said Dr. Condé.
After public health authorities fumigated the house, MSF nurses visited the family to test Espinoza’s brothers, sister, and uncle for the disease. Test results were negative, but the team remains skeptical. According to MSF nurse Teresa Lencina, “If the infection was recent, the test doesn’t always pick it up. We will have to test them again in a couple of months to be sure.”
What Needs to be Done to Fight Chagas
In Bolivia and elsewhere, Chagas remains a neglected disease, poorly understood by its victims and medical personnel alike. It is perceived as a complicated disease to diagnose and treat, especially since an infected person can live for several years without showing symptoms. About 20 to 30 percent of those infected will develop the chronic form of the disease up to two decades after they first contracted it. Then the parasite begins to cause organ damage or even death, usually attacking the cardiac or digestive systems. Heart failure is a common cause of death among young adults with Chagas. In many cases, seemingly healthy people die of complications from Chagas without ever knowing they were infected. Currently, only young patients like Espinoza are offered treatment through Bolivia’s national Chagas disease program. Adults’ increased vulnerability to drug-related complications makes many medical personnel reluctant to offer medication. MSF began its program in Cochabamba in 2007, with the goal of extending access to treatment for patients up to 60 years old. This makes it one of the few programs in the world offering Chagas treatment to adults. For physician Wilma Chambí, who has worked with MSF in other Chagas programs since 2002, this is a positive step. “It was very hard as a doctor to say, ‘I can treat your child, but not you.’” MSF hopes the success of the Cochabamba program—where Bolivian medical personnel have been trained to diagnose, treat, and manage the disease—will encourage widespread treatment of Chagas by primary caregivers.
Bolivia 2009 © Mary Vonckx/MSF
Adriana Villa, 35, encountered barriers to treatment when she learned, in 2007, that she had Chagas, a disease she calls “the kiss of death.” She was living in Bolivia’s capital, La Paz, where Chagas is not endemic. “I don’t know when or how I got infected,” she said, “maybe when I was a child, or visiting someplace where there were vinchucas. I went to various doctors asking what could be done…What they told me was, ‘Your heart is fine, don’t worry, everything will be fine.’ They told me there was no treatment for Chagas.” Villa persisted in seeking treatment. “I learned about someone else in the same situation who was getting treatment from MSF. We moved here, to Cochabamba, so I could begin the treatment.”
MSF and the Drugs for Neglected Diseases Initiative (DNDi) will cohost a public event on October 1 and a scientific symposium on October 2 focused on Chagas disease in the Americas. To be held in Los Angeles, the events aim to raise awareness of the public and of the health community, to discuss patient needs and treatment challenges, and to put forth recommendations for action to address the hidden burden of Chagas disease.
During the course of treatment, Villa met another obstacle: adverse reactions to the drug. The medications used to treat Chagas, benznidazole and nifurtimox, were developed in the 1960s and 1970s, and little research has been done since that time. The drugs can provoke side effects, some serious, which are more common in adult patients. “After two weeks, a rash broke out on my skin, my face was feverish but my body was cold. The MSF doctors told me to suspend the treatment and to rest.” After two months, she began treatment again with a second-line drug. The treatment will last 60 to 80 days and require weekly visits to a doctor.
Villa uses her experience to raise awareness of the need to get tested and of the availability of treatment. “I speak with everyone I know and encourage them to get tested,” she said. As a result, some of her friends learned they, too, had Chagas and have begun treatment. “They were people who seemed healthy,” she said. “Many people don’t even know they have it.”
Dr. Chambí wants that to change. “Here in Cochabamba, MSF’s experience is encouraging the staff of health centers to diagnose and treat Chagas. When we started, the staff didn’t trust that the treatment really worked. Once they were convinced that the treatment worked, they feared the adverse effects.” Chambí and other MSF staff have trained doctors to manage the side effects of treatment: “If it’s taken care of right away, the patients don’t have to get worse. The doctors have been very receptive; now they have confidence.” Reflecting on the centennial of Chagas’s discovery, she adds, “Hopefully, 100 years from now, Chagas will be just a story we tell.”